About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, July 31, 2015

If you suffer Parkinson’s you may be
familiar with the horrid phlegm problem!

Sherryl Klingelhofer, who took care of
her father with PD and has dedicated herself to helping others in his memory,
has so much good advice to offer, I had to share the following useful tips with
you:

“Here’s an idea if you are already dealing with this common
Parkinson’s problem!

We had a Physical Therapist show us an exercise to help the
body "remember" how to swallow that helped Dad clear his throat a
bit. Doesn't get RID of the phlegm, but
made it easier to deal with.

SIT UPRIGHT, make sure the head is over the torso and the
torso is not leaning back or in a concave shape that would curve the oesophagus
or compromise the entry in the throat. If needed, put a small pillow or rolled
towel behind the spine against the back of the chair to assist upright posture!

Cough. Drink a SIP of water. Cough. (you may need to
swallow, do so with or without the sip of water)

Wait and repeat about half a dozen times. Do this a couple
times daily in between meals, but also try it BEFORE eating to jump start the
brain.

That laying back in a bed or lounge chair is a real booger
(we might just as well stay in icky-mode)! It lets the phlegm sit right on the
"swallower", so positioning is really important! Next time you start the choking, shove your
hips back into the chair and lean slightly forward to cough/swallow.

You can practice opening and closing the throat if
swallowing is being compromised! And
since you never think about keeping the muscles in the throat active, until
after the fact, begin these now to avoid future issues!

Say “X” then “R” several times (yes, out loud so it can be
heard!)---do it slowly and pretend you telling someone how to enunciate and say
them correctly!

Say “QUICK-QUACK-QUIRK” several times as above

Make a fire engine noise by saying (loudly!) “rrr-RRR-rrr-RRR-rrr-RRR” and make it go up
and down as they do: you will feel your
throat at work!”

Friday, July 24, 2015

Going out to eat is a leading social
activity, but for someone living with Parkinson’s it can become a little daunting.
Self-conscious of bad posture and poor walking, shuffling as if 100 years old, it
may be just in my imagination but it’s as if all eyes are upon me. Eating
proves difficult and trying to choose something from the menu that requires
little dexterity, finger food being the first choice, where a knife and fork
can be politely discarded. I used to love going out, but these days it’s a different
story. Just getting showered, dressed, doing my hair and make-up, takes every
ounce of energy. This is not counting the emotional energy required when going
out. I can spot someone with Parkinson’s a mile off, and no doubt I stick out
in the same way to fellow sufferers, with those familiar tell-tale signs we all come to
recognise.

I was taken out recently for lunch to a
nearby café and was amused to read the rather imaginative menu. There was a
“Snow White Salad” and a different salad named after each of the seven dwarfs.
A “happy salad” sounded positively inviting, and I would have happily
ordered it. However, I don’t think the “sneezy salad” would evoke the same
reaction, and I wondered if the chef added a secret ingredient I’d rather not
know about. I wonder if this is the least ordered dish on their menu? Likewise
the sandwiches also bore names of well-loved characters from children’s fairy
tales, and we ordered a Pinocchio and rather fitting, yes you guessed it........a Geppetto sandwich!

Friday, July 17, 2015

Over the years I have been asked by
doctors and health officials to fill in a “Quality of Life” questionnaire
appertaining to Gaucher and Parkinson’s disease. I understand this can only give
the doctors an indication of how the patient perceives their illness and how
well they are coping, but I believe this test leaves much to be desired.
Firstly, there is the question of background. I was born in England and once
when filling out one of these questionnaires in the USA, I realised that although
the British share a common language with Americans, the differences between us culturally
is remarkable. I am quite sure my answers on the American based questionnaire
bared little relevance to my true situation and if anything gave a false
picture.

The answers given – usually multiple
choice style – do not take into consideration cultural differences nor how a
disease can have very different repercussions on an individual. Since we are
all very different, the answers are naturally subjective. There is also a
matter of honesty. There are usually very personal questions relating to one’s
sex life, depression and even suicidal thoughts. How many people really answer
these extremely intimate questions truthfully? Doctors may be surprised to find
the answer is: very few!

I don’t know what could be created to
replace this system of “quality of life” questionnaire that no doubt most
people have filled in at one point or another, but in my opinion, the present
system helps neither doctor or patient.

Friday, July 10, 2015

Men and women are intrinsically
different. I am not talking about physical differences – I am referring to the
psychological state, where one’s emotions can either make or break a situation.
It is in a woman’s very nature to question, persisting in getting not just one
answer, but several if not satisfied. Men and women handle ill health in very
different ways. Women usually share with one another, thereby alleviating some
of the isolation experienced by anyone living with a serious on-going long term
disease.

Coping techniques are
important tools in living with ill health. Women are usually more willing than
men to open up, revealing feelings that are often kept hidden. Getting to the
root of a problem, not leaving anything hidden and uncovering difficult topics
that require airing, is a healthy mental attitude. Like peeling back the
countless layers of an onion, revealing oneself can be scary and evoke feelings
of vulnerability. Anything worthwhile in life takes work, energy and
motivation, so don’t be afraid to peel back those onion skins, to reach your
full potential. What have I been up to this week? With a young puppy in the house, life is not dull that's for sure. Grab your cup of coffee and take a moment to read my latest article in The Huffington Post.

Friday, July 3, 2015

As an advocate I have been sharing my
story, in the hope of bringing greater awareness to Gaucher disease. Story
telling is a wonderful way of enlightening others about a rare disease. It was with
this in mind that I wrote a collection of poems which has been made into a book
and is available on Amazon.

I decided to share my story through
poetry, recalling my early years to adulthood, which some may find resounding
similarities to their own experiences. I hope fellow Gaucher patients and their
families will know they are not alone, and realise just how far medicine and
technology has come in the last 50 years. Circumstances were very different when
I was diagnosed, and thankfully over time great strides have been made.

I am honoured to be a judge on the international
panel for "The Spotlight on Gaucher Film Contest" aimed at patients and
their families. The contest encourages those living with Gaucher disease, to
tell in a unique way the story of how they live with a rare disorder. To find
out more, click on this link and read about an exciting opportunity this summer
to become involved, or read more in my article in The Huffington Post.